Burnsville family raises awareness for rare disease

BURNSVILLE, Minn. (FOX 9) - Monday marks Rare Disease Day, and one Burnsville family is highlighting the impact one uncommon disease has had on their lives – Rett Syndrome.

Shortly after their daughter, Lindsey, was born, Jim and Mary Kallstrom noticed their baby girl wasn't developing. 

"She never lost the ability to walk or talk because she never walked or talked or sat," said Mary. 

"They are mentally fine, but it's like you are trapped in a body that won't work," Jim continued. 

The Kallstrom family has been raising awareness for Rett Syndrome since their daughter was diagnosed with the rare disease at a young age.

At two-and-a-half years old, Lindsey was diagnosed with Rett Syndrome, a rare genetic neurological disorder that impacts brain development and is mostly seen in girls. 

Mary says she had some difficult conversations with doctors after the diagnosis. 

"I said, 'She's supposed to go to preschool next month,' and she said, 'Oh, spend every waking moment with her because her life will be short.' That kills me because now look at her! She's 19 and we've come so far," said Mary. 

After visiting hospitals in Texas and Chicago, 19-year-old Lindsey can now stay close to home for treatment at Gillette Children's, which is recognized as a Rett Center for Excellence by the International Rett Syndrome Foundation. 

"Doctors that know her and know Rett Syndrome and can kind of tell us what's going on, why she's doing what she's doing, and some of the behaviors...it's really remarkable to have that support," said Mary. 

The family also does their part to raise awareness and money for a cure with an annual Walk N Roll Strollathon. 

"You can choose to be bitter, or you can try to make things better and that's kind of our motto," said Mary. 

Lindsey Kallstrom

Receiving a rare disease diagnosis is difficult and navigating the insurance process can also be extremely tough for families. 

"It's a frequent concern that I hear voiced by families that they are limited in who they can see and when even with rare conditions," said Gillette Children’s Pediatric Neurologist Dr. Tim Feyma. 

Dr. Feyman recently testified in support of proposed legislation that would bar insurance health plans in Minnesota from limiting patients like Lindsey to a network when they may need to see a specialist outside of it. 

"We are trying to take away some of the barriers for patients who need to see specialists that may be outside of their typical insurance referral path," said Dr. Feyma.

There are about 7,000 diseases that fall under the "rare" category, meaning they impact less than 200,000 people.